When the Side Effect is Death

Recently, I read a newspaper article about a nurse in Baltimore: The headline was

NURSE ON TRIAL FOR MURDER CALLED COMPASSIONATE.

It threw me into a panic. She was accused of taking a GORK off a respirator. GORK is a medical acronym in universal use – it means, God Only Really Knows. The patient in this case had stopped breathing 24 hoursbefore and had been brought back. He also had bladder cancer, cirrhosis of the liver, pneumonia, and heart failure. My reaction to that headline was “Oh, God, somebody gotcaught.”

What I felt was what most nurses I know felt. I know because I asked them. They were truthful, because I’m from the inside of medicine, from the same family, so they shared with me. All have been nurses for five years or more, some for as many as fifteen years. Each has worked in at least three hospitals, and everyone agrees, it’s about the same in all of them. They range in age from 24 to 50, and all have children. Medicine is very important to them, and none considers it just a job.

Clinically, a GORK is a man, woman, or child lying in bed, unable to do anything for himself; he has no voluntary functions left. There is usually a tube through his nose down which liquid food is poured; he never tastes it. Sometimes he’s unable to digest it, and sometimes his stomach gets too full so he vomits it and then has to be suctioned quickly so that he doesn’t choke on it, or aspirate it into his lungs, which causes pneumonia. He’s unable to move purposefully, and his involuntary movements are erratic and seizure like. If his eyes are open, they stare without blinking. Often they are taped shut so his corneas don’t ulcerate. You can talk to him, and he doesn’t respond. He doesn’t appear to be able to hear. If he has an itch on his nose, he can’t scratch it. He’s locked in cement, the cement of his own body. He’s a prisoner.

The human reality, the thing I say to myself, is “That could be me… or my child, or my mother, or my father.” And then while I pour the food down these tubes, and wash their faces, and turn them over and clean their feces, and put pillows between their knees so they don’t get bed sores, I talk to them and look at them and ask out loud and sometimes to myself, “Is there anything more I can do?” And then with frustration and pain, “Is there nothing more I can do?”

The tool used in medicine to separate the brain dead from the severely brain damaged ( GORK’s) is an EEG machine. From the outside you often can’t tell; they look the same. You have to have two or three EEG readings, 24 hours apart, to certify brain death, which means you can legally take someone off a respirator and then bury them. I can’t explain that any more kindly. I’m never quite sure, even with a flat EEG, that a person’s awareness is gone. I know it means that they are sure there’s no consciousness. I’m not.

There’s just too much that our machines can’t measure. They can’t measure pain; They can measure only the reaction to pain. And they can’t measure caring and intuition and other tools of medicine. They can’t measure “will to live,” but I’ve seen it make all the difference in a patient’s getting well or dying.

I’ve worked with people who were severely brain damaged (GORK’s), and the space between brain damaged and brain dead is sometimes as thin as a hair. You can still get spikes on an EEG and feel that someone’s not “in there” anymore. And if they are, it’s a terrible place to be.

“…They understand that in some cases, at a certain point, death wins. Then the best they can do for anyone is relieve pain…”

It’s easier for me to take care of someone who’s brain dead for the 24 or 36 hours between EEG’s. Then I can just take care of the body and when I see big craters of bedsores, I don’t feel the pain. When saliva is slobbered down his face, I’m not embarrassed for him. When his family sits around the bed and cries, I still have trouble handling their pain. But not as much trouble taking care of him.

It’s the GORK’s that cause me the most grief. Maybe there is a flicker of consciousness, and this poor guy knows what’s happening to him. Maybe he’s embarrassed; maybe he can’t stand the indignity. Maybe he’s in pain, and I don’t know he’s in pain because he can’t tell me he’s in pain.

For a period of time, when there’s any question of a patient’s being able to function again, there’s not a good nurse who wouldn’t break her neck taking care of him. Feeding him; washing him; turning him every two hours; suctioning the secretions out of his lungs so that he won’t drown because he, himself, can’t cough; talking to him; petting him; even kissing him. If there’s any chance of return of functioning, we do this, wanting to. But when the only thing that a doctor can offer is that possibly he’ll return enough to be strapped up in a chair not to be able to sit up himself, no bladder or bowel control, never to be able to eat by himself or interact with anyone…. When this is the final hope a real stretch of what medicine can do for him, then it’s almost impossible to do. Not because we don’t care but because we do. Let’s listen to Andrea describe it as she sees it:

“Did you ever walk into a situation that utterly and absolutely repulsed you? I don’t mean like blood and guts. Let me explain. This is only one example but not an unusual one. “It was a woman with brain-stem melanoma [cancer]. She wasn’t old, only in her fifties. She was lying in bed, hooked to a respirator, her head hanging to the side and her tongue falling through her open mouth. She was drowning in her own secretions. She had black lumps sticking out all over her body. And here she was, on a respirator. She was supposed to have tube feedings, and I couldn’t give them to her. I couldn’t add to her misery. I couldn’t add to what they were doing to her. I couldn’t even suction her. She stopped gurgling finally and died. And do you know what I thought the whole time that I was leaving her alone? It reminded me of old people, those poor old people, digging in garbage pails. How degrading. How immoral. This shouldn’t be. But it is. And for me, there is much more to the moral issue than pulling a plug.”

Is withholding the means to extend life, when we have the knowledge to extend it, passive? If it’s actively withheld?

There isn’t a nurse I know, and I’ve been nursing a long time, who wants to be resuscitated if she dies. In fact, many of us have seriously considered wandering into an unpopulated area in the hills somewhere if we are told we’re going to die. No hospitals, no doctors, no extraordinary life-support systems. We’re almost a club, and we’ve all decided to have “NO CAC” tattooed across our chests, in case somebody finds us and drags us into an emergency room. CAC means Cardiac Arrest Code. It means being “brought back,” and that’s a nightmare for all of us.

Over the years, I’ve asked the best nurses what they think about mercy killing. None of them would be willing to do it on a patient she didn’t care about. It’s not worth the risk. I’ve heard good nurses say, “Oh, I could do it. But only for my mother, father, or my child.” And then they add, “Or maybe someone I loved.” Unless there’s that kind of emotional investment, few people are willing to handle the guilt because a GORK lives immortally on… in your own brain. A terminal patient’s stopped screams stay in your own bone marrow. You can’t be sure if you’d do something like that.You’re never completely sure.

I’ve heard a lot of talk about passive as opposed to active euthanasia. When those of us inside medicine talk about it, we find it difficult to figure out what passive euthanasia is. Watching someone starve to death because you’re not giving him food or IV’s seems active when you know it takes food to keep him alive. “Keep him comfortable,” when he’s a terminal patient in excruciating pain, means give him as much medicine as he needs and if it kills him, it kills him. None of this is done easily. Here’s how Tracy feels about this issue:

“It’s seldom that you need enough medicine to kill pain and kill the patient too. But that ‘seldom’ doesn’t count if it’s you and your patient who are in the position. You only have to walk into one room, to have to suffer over it, because then all the talk about seldom sounds empty.”
Theoretically, it’s not euthanasia to give a high dose of pain medicine to alleviate pain, even if it hastens death.
If my patient is screaming and yelling in pain, begging to be put out of his misery, I say to the doctor, “His respirations are shallow, but he desperately needs more pain medicine. He’s tossing and turning. He’s in agony.” If the doctor says, “Give him morphine; we have to help his pain,” both of us know what the other is saying. Both of us know that a side effect of morphine is depressed respirations. But it’s still theoretical. Once I pick up the needle and syringe and draw up the morphine, once I inject it into him and fifteen minutes later he stops breathing because of what I did, it feels like euthanasia. To everyone else, his death was only a side effect, but to me while I stand there and it’s my patient who stopped breathing, it doesn’t feel like a side effect. It feels like I killed him.

“…Medicine deals in minutes; when someone’s heart stops and you’re the first one in the room, you make the individual decision to jump on his chest or walk away….”

Please don’t misunderstand. Nobody wouldforce the nurse to do it. She’s not a robot, and she can refuse. But she can’t cop out by pretending it’s all thedoctor’s responsibility. The law may say it is, but when she looks down, she’s the one holding the empty syringe in her hand. Her patient may have had “terminal cancer,” or another irreversible disease, but once nothing more can be done in medicine, the real question is whether she and the doctor agree on values. He makes his decision, then she makes her decision… then she does the act. They share the responsibility and while he may feel sad or impotent she feels the guilt.

In a situation where potassium is routinely added to IV solution, if the nurse says to the doctor, “This patient’s potassium is already high enough to almost stop his heart,” and he answers, “Please don’t do any more blood studies,” and then, “He’s terminal, you know,” he means that a stopped heart is an easier death than being eaten away by cancer. If she agrees, she adds potassium as ordered and cancels the studies. If she doesn’t agree, she refuses and lives with her patient’s pain or asks another nurse to do it.

The doctors and nurses who seem to be the bravest, the most willing to carry the guilt and responsibility for this kind of decision themselves, have been in medicine a long time. They’ve come to terms with their impotence. They’ve gotten rid of the delusional idea that they can always beat death. They understand that in some cases, at a certain point, death wins. And then, the best they can do for anyone they really care about is relieve pain.

In the large teaching institutions, interns and residents work in the emergency room and are called for emergencies on the floors. That’s how most respirators are put on, by young men 27 or 28 years old. They’ve had eight years of medicine learning body mechanics. Anatomy and physiology and the study of tissues and disease don’t prepare them to make philosophical decisions on quality of life. And I’m not putting them down: It’s a hell of a responsibility. In an emergency there’s not a lot of time to sit and ponder. Often, there’s no way of knowing if a patient will recover function, even minimal function. That takes a lot of years of experience, and then it’s only an educated guess. Yet once that decision is made, to put a patient on a respirator, it can only be undone by a flat EEG, a stopped heart, a court order, or covertly by another doctor or nurse. One of the problems in medicine is that we have to practice on real people. So if in an emergency the resident chooses to place an 85-year-old patient with a terminal disease on a respirator, then if his judgment stinks, it can’t be legally reversed.

But law isn’t medicine and compassion is one of the tools doctors and nurses use in their profession and in their decisions. There’s no easy way for them to disconnect it not when they’re up close. Not while you’re looking into eyes that stare back in agony, not while you’re close enough to hear the screams and wipe away the tears. Not while you yourself are frightened of disease and scared of death. I’m not implying that I have answers, but in any other business there are backup systems. In medicine, because doctors have been set up as god-heads, because medicine itself seems mysterious, the backup systems aren’t efficient. Each time two sick patients call, and we choose to help one before the other, we’ve made another God decision. Medicine deals in minutes; when someone’s heart stops and you’re the first one in the room, you make the individual decision to jump on his chest or walk away. Let’s hear how Sherry did it:

“One evening I came on just as this patient came in. She was 50 year old and she was 50 percent burned. In ten minutes I loved this lady. They had just gotten through admitting her, debriding her, tanking her [pulling off dead skin and washing her in a whirlpool).

“When I went into the room and met this lady, I couldn’t believe how alert and cheerful she was. It didn’t even seem like a scared cover-up. She was great. [She was probably in shock.] She told me how it had happened and that it was really an accident with burns sometimes it’s hard to tell. I left the room after about ten minutes and she seemed supercontent.

“An hour later I went back in to take her vital signs; I couldn’t believe it – dead. I was so shocked because I had just left this lady talking and smiling.

“I went out to the lounge and said to the doctor, ‘She’s dead.’

“‘Who’s dead?’ he asked me. We weren’t expecting anyone to die right then. I said, ‘The lady you just admitted.’ He jumped up and raced out of there like a bat out of hell. Got to her door and stopped cold. ‘What should I do?’ he asked me. He was the resident.

“‘You going to pound on her chest?’ I asked. ‘She’s cold. I mean, she’s dead. What are you going to do? Is she going to live anyway?’

“He went running at first as though he were Superman, and then he stopped short at the door and all he said was ‘What should I do?’ He stood outside where he couldn’t see the patient.

“The discussion that followed wasn’t between us. It was inside each of us. Individual. He was fighting with himself. ‘I hate to pronounce anybody dead,’ he said, looking at me. ‘It feels like such a final thing,’ and, still not going into the room, ‘I always think, What if? God forbid.’

“I looked in the room and looked at him. Her monitor was a flat line flat as a board. I said, ‘I think she’s dead.’

“After several minutes, he finally went in to pronounce her, and I stood there going over what had happened. I had walked in, seen her, slapped her, and checked her pulse. Nothing. I was so shocked, I didn’t expect it. I wasn’t prepared.” (When Sherry had gone into the room first, there had been no way for her to know whether the woman’s heart had stopped one minute or five minutes before. That makes the difference between real life and existence.)

“I decided not to call a code. I had images of the woman laughing with me just an hour before. So it took me a minute or so to check, and then I remembered the doctor saying, ‘Her spirits are good, but I still don’t think she’ll make it. But…’

“I walked out of there very slowly, taking my time before I told the doctor. I don’t know exactly the moment, but I know I decided not to try to bring her back. I really was crazy about her. There would have been so much pain, and there was practically no chance that she would have survived the burns.”

“‘You’re talking about morality,’ she said accusingly. But I wasn’t talking about anything but me and my patients….”

Is it a God decision not to save a person’s life? To extend it, if we have the means to. Does it make a difference that a patient asks you not to be heroic? Are we only entitled to certain God moves?

Once we take active part in saving a life, if the patient is a GORK, we have to witness the sacrifice of the entire family satellite. Financially and emotionally, they wind up being wiped out. Bankrupt. It’s partially our responsibility and it costs us. Marilyn described a case:

“I promised to help relieve suffering and to ‘do no harm.’ In an area with vague rules, I have to determine what harm is. Saving a non-functioning person to give back to his family, dumping my decision back on them, making them pay emotionally and financially doesn’t seem like ‘doing no harm.’ And it feels like hell. I watched an old man’s savings disappear one time while he was dying on a respirator. He died anyway, his heart probably broke. Before he stroked out, he had told me that he had skimped and saved for years so his grandson could go to college. The old man was illiterate and that was his idea of immortality. Nobody in medicine broke any laws and the old man lived long enough to deplete his dream. His grandson was the one who told me. I remember that man – even when he was a GORK. I knew he was special, I loved him, and I still think if I had any guts that kid might have gone to college.” Karen did unplug a respirator and she’d like to explain why:

“Sandy was a five-year-old kid. I had been taking care of her for several months. She had a malignant brain tumor. They had operated several times, her head was shaved, and she had scars like zippers over her head. She got worse and worse and finally slipped into a coma. Her parents used to be at the hospital every day, they’d take turns minding Sandy’s twin brothers, who were three years old. The mother couldn’t stand it and finally took a bunch of sleeping pills. The doctors used to stand at the foot of the bed and shake their heads saying, ‘Medicine can’t do any more.’ The mother survived the pills and after that she used to talk to me. One night, Sandy just stopped breathing and would you believe some nut jumped on her chest and her heart started beating again. They put her on a respirator. She got infected and then the doctors started giving her antibiotics, sticking her with needles all the time. The kid looked like a pincushion.She was getting all black-and-blue, and nothing seemed to touch the infection. She smelled awful. Sort of pungent and sickly sweet, like decaying tissue. I could even smell it when I was out of the room. It stuck in my nostrils, and if I breathed through my mouth I could taste it. My clothes and hair and skin smelled like it too.

“She had been such a pretty little girl, and I really cared about her. I kept asking everyone how we could get her off that damn machine. Nobody could do it… although they all agreed it would be better if she died. They told me if her heart stopped again to walk slow before I called anyone. I knew what they meant. Her father came in one day and told me he couldn’t stand it anymore. He was going to run as far away as he could get. I thought about the twins and about the mother. Sandy had died once.

“I went into her room to bathe her as I always did, and this time I closed the door. I took her off. Then I bathed her and powdered her and fixed her bed. By the time I hooked her up again, her heart had stopped…. As soon as I took her off, I could breathe better.”

“….Our patients are dependent and sometimes defenseless and our desire is to protect them. Yet these emotions are not considered in medicine. It’s not allowed….”

Doctors and nurses have to think quickly and make decisions constantly in order to save lives. Big decisions. But the biggest decisions are the ones that they aren’t allowed to make. I agree. We should never have to make decisions of such magnitude. We should never have to watch our mistakes cost other people so much. We should not have to carry all that pain and suffering and responsibility.

Who should? Some infallible robot who doesn’t hurt every time he identifies with a leukemic or a terminal cancer patient or a person who was a person and now just lies there. We shouldn’t have to be exposed to all of this because it’s humanly impossible to never make a mistake; it’s uncomfortable to have to hurt people all the time; it’s unreasonable to expect us to maintain the kind of distance needed to always be objective.

There are no standardized criteria, except respiratory distress, for putting someone on a respirator, and only brain death or a stopped heart for taking someone off. But what would you do if a 25-year-old man with trauma from an auto accident came into the emergency room. You know he needs a respirator temporarily and that he has a good chance to recover and live a full life. You have no time to ship him anywhere else without losing him because of his breathing difficulties – and all the respirators in the hospital are in use. One of them on that 85-year-old non responsive terminal cancer patient. As a human being, would you apply for a court order? Hurry! This is an emergency.

There was a time when I was young enough to attack doctors for their humanity, their impotence. I used to find myself ready to fight whenever I knew a doctor had given orders to “keep him comfortable.” Because I knew that implicit in those instructions to give enough medicine tokeep someone comfortable, to “snow them under,” was the request not to bother the doctor anymore. It was later I learned that even he couldn’t help. And that the “It’s in God’s hands now” line is the admission of impotence. Again, when I was younger, I only thought it meant that the doctor was lazy or incompetent. Also, I resented the fact that whatever “enough medicine” was had to be given by a nurse.

Whenever a patient is crying for medicine, sobbing in pain, the nurse is the one who hears the screams. Patients cry to us because we’re there more of the time for longer periods.They pull at us and plead with us not to let them go on like this… that something has to be done. We’re the ones who are with them for hours each day, hearing the moans, watching their pain, party to the indignities. We’re the ones they share with. Our patients are dependent and sometimes defenseless and our desire is to protect them. Yet these emotions are not considered in medicine. It’s not allowed. I’ve taken more courses than I can remember on “Death and Dying.” I know how to deal with people who are dying. I know how to say things that will make them feel better. I’ve learned how to listen to them. When I’m there, if I hold their hand and keep them company so that they’re not afraid of being abandoned, I know they feel better. But nobody has ever addressed, at any conference or class I’ve been to, the feeling of the doctor or the nurse when it gets to a place where you want to stop the misery so badly that you are willing to sacrifice yourself for them.

I’m not saying it’s right. I’m not saying it’s a good system; I’m saying we need a better system. If we could acknowledge that the people in medicine get tired and upset, sometimes have lousy judgment, get emotionally involved; if we could realize that the doctors and nurses are not intrinsically better than everyone else, then maybe we could set up a better backup system. Something more effective than what we have now. What they say that nurse did in Baltimore is being done in hospitals and homes now. I don’t know if she’s better or worse than the rest of us but I do know that a system which allows the kind of scattered individual judgments for life-and-death decisions, whether they be made by a doctor or a nurse, is not viable and needs change.

I tried to handle this from inside medicine. Once, I went to a directress of nursing and laid all this on her. She was progressive and obviously aware of my dilemma, but what she said was, “My dear, you’re not talking about medicine. You’re talking about issues that greater minds than ours are trying to solve.” And as she dismissed me, obviously uncomfortable that I had brought the whole subject up, she said, “You’re talking about morality.” It sounded like an accusation, like I had stepped out of line, and all I thought was “I wasn’t talking about anything but me and my patients.”